Hello all. Another week down. Another appointment under my belt.
It has been a rough week to put it mildly. As many of us know, stress is becoming a major epidemic in today's society and culture. Not only do those of us with chronic illnesses have things to worry about everyday, but the entire world is going through so much economically, politically, etc. I always feel so overwhelmed with what I have on my plate, I find it hard to keep up with current events and pop culture because it adds a whole other level of worry. My family, of course, is not immune to any of this. As a prime example, I believe as a family, we had a nervous breakdown this past weekend. In the days following, we have been trying to pick up the pieces and mend the residual damage.
In doing so, I have been avoiding modern technology. I find, for myself, that refocusing my thoughts and priorities is usually what it takes to get my mind back on the right track. I find myself resenting what I see on television or on the computer that I desire but do not have. I find myself getting emotionally involved and attached to news stories from across the world, and in turn having a strong desire to do something about it. In reality, I have no control over politics. I have no control over natural disasters. I have no control over who's cheating on who, or who's lying about what. No control, must let it go.
Today, I actually sat down and watch television. I allowed myself to relax and watch an entire show. John Ramsey was on this particular program. He was discussing what has gone on in his life over the past 15 years, since the death of his 6 year old daughter Jon-Benet. He lost his daughter, he and his family were looked at as having something to do with the tragic death, he lost his wife, after her death the family was publicly cleared of any wrong doing in the death of Jon-Benet, and finally he found a new love, a new wife. He has written a book about his ordeal. I could imagine it would help so many going through any type of struggle in life to put things into perspective.
He said one important thing that stuck out to me. He was asked how he was able to find happiness after so much turmoil. He said that a few years ago a good friend asked him, "Do you think the best days of your life are behind you." John said, "Well, yes. How could they not be?" His friend replied with a comment similar to: You have to think the best days of your life are ahead of you. John explained why that made so much sense. There has to be something to look forward to. This is what we call hope. You must believe that the best days of your life are ahead of you.
I quickly jumped to my desk to write this down. I thought, "There has got to be some way I can use this. Is it possible for the best days of my life to still be ahead of me?" An honest question. Ironically, as I'm talking to myself and jotting this down, John is still on the TV in the background explaining it may not be what we expect, it may not be what we planned, it probably isn't what we think will make us happy right this very moment, but if you don't believe there is something better out there for you...... God puts us on this earth for a purpose. That lead me to one of my favorite thoughts, "God does not cause suffering in vain. He would not put us through something so hard for no reason." It started coming together for me.
Still, even writing this blog, hoping someone out there is reading and actually getting something from my ramblings, I still don't feel that peace. I am seeking it, actively. I want that peace of mind that it is all going to be ok. I am doing my best in every possible way, and that is all I have control over. I have begun to pray outwardly. I actually get down on my knees and open my mouth and speak my prayers. I consciously decide to find the good in every situation, which actually starts becoming second nature quite quickly. I actively slow my snowballing negative thoughts to grasp reality and look at things more rationally. Yet, I am still not whole.
I mentioned that I had another appointment this week. This was a follow up with my immunologist, whom I am beginning to love. No big news, thank goodness. We are making an attempt to control the allergies he discovered in hopes that it will help with my energy levels and daily feeling of malaise. He along with my primary believe that many symptoms from the combination of diseases I have may subside once my body is not under so much stress. I believe they are right. I have hope that the allergy medication along with allergy shots will help lift some of the weight off so my body can gain some strength and control.
I also wanted confirmation on the most recent diagnosis. It is new to me as is the terminology surrounding it. I wanted to be able to relay the information on my blog as well as understand what I am facing. I have APS II or autoimmune polyglandular syndrome type 2 aka Schmidt syndrome. It is a rare disorder in which the immune system attacks several different organs or glands throughout the body. Most typically it is seen with someone who has been diagnosed with Addison's disease (a condition where the body does not produce enough cortisol) along with Type I diabetes or Hypothyroidism. I, however, have not been diagnosed with Addison's. It has been thrown about and I have been tested for it, but no diagnosis has been made there. Since it is a rare syndrome there is little information on it. There are also very few doctors who understand the scope of it. Even my immunologist consulted with doctors at a university to insure the diagnosis. As I learn more, I will write more and inform more, but I would like to back away from that at this time to prevent misinformation to needy people.
I only want to inform, inspire, and release. I hope that my new saying, "The best days of my life are still ahead of me" will begin to become a natural part of my thinking. I hope that it can inspire me to do something positive with the nervous energy that builds up, as it always does. I am always looking for inspiration. I am always looking for that one thing that is going to spark the passion in me I had before it swept so quickly away. I am here for a reason. I am here for good.
Friday, March 16, 2012
Thursday, March 8, 2012
A Good Day To Get Back To Basics
Hello world. It has been a while. Quite a long while. I'm glad to be back though. The last three or four months have been a roller coaster. I feel that every time I get on it my blog that is what I have to say. Life with chronic illnesses, especially comorbidities, is a roller coaster. Why do I still find myself waiting for the lull? waiting for the downtime?
The holidays turned out to be great. My last post was just before the holidays, and I remember being so down. I was so worried for my son and family. I was so worried I would be feeling horrible and they would have to deal with me that way throughout. Luckily, I have an amazing family who pulled together and lifted me up. Although, it did not go off without a hitch, I must say that my son had a wonderful time. I got to enjoy some modified yet traditional holiday food as well as seeing the joy on my son's face. It was extra special to me because this was the first holiday I did not feel like an outcast, a burden, or forgotten. That is something I have not been able to say for at least 4 years.
The immunologists tests came back. Fortunately or unfortunately, I am not completely sure I understand the terminology and jargon he used so I will reserve my explanation and results until after my followup visit with him next week. I can say that we do have some new answers and my hope has been restored.
I really don't even want to make this entry about health. Health is such a vital part of everyday life for all of us. It has consumed my life to the umpteenth degree. Today, I would just like to take a deep breath and reflect on any other aspect of life.
I have come to the realization that the ages between 25-30 are a very difficult transition stage for many. I happen to be in this age group so I know first hand, but in my interactions with my peers as well as my elders I am hearing many of the same concerns. It got me thinking? How can they all be so confused, overwhelmed, and have so many doubts? I thought I was nearly alone in my feelings because my health has derailed so many of my plans and dreams. I was wrong. How selfish, right? HAHA
We all get to a stage in our lives where we realize that what we thought we would have accomplished, has yet to be achieved. What we thought we would be doing, most of us are not. Where we thought we'd be in our lives is far from where we are now. What will the future hold? Did I take the wrong path? Can I really live this way for the rest of my life? And why did no one tell me it was going to be so hard? Does anyone have an answer?
I do! The answer is, no one knows the answer. What I do know that is that our lives are not in our control. We can do the best we can, but we have to just go with the flow. Change is inevitable. You cannot plan who you will fall in love with. You cannot plan landing the perfect job. You cannot plan how many kids you'll have by any certain age. These things can be planned for, but they are not certainties or give ins by any stretch.
The truth of the matter is, every generation has been through this transition of being a kid turning into an independent adult. All at different ages and different stages, but everyone goes through this. But look at this from a broader lens. In your twenties, given the life expectancy these days, is only about a third (if that) of your life. The changes, uncertainties, doubts, fears, joys, accomplishments, achievements you have gone through at this stage are merely a small portion of what you have yet to see. Rest in the fact that no one knows exactly what they are doing. Rest in the fact that you have every opportunity to change the situation you are in at any point...or even, at that, maintain where you are i that's what makes you happy.
You do not have to live up to anything. You do not have to do things because someone else told you that's how it is done. No one has the answer. Find what inspires you. Don't expect great things. We forget that as kids the smallest, seemingly most insignificant, things amazed us. If reading inspires or motivates you, do it. If exercise does, do it. If blogging does, do it. If sky-diving does, do it. If starting a company does, do it. The bottom line is, nothing gets done if no work is put into it. You have to decide for yourself that "this" is what you want to do. Be confident in that. It is what makes you happy.
Yes, we all have responsibilities. We all have obligations. We all have some sort of expectations. But sometimes the simplest statements wrap it up. Do your best. That's ALL you CAN do. Beyond that, let it go. Knowing you've done what you can will give you so much power. You know the saying, change the things you can and accept those you cannot change. It's true. All the worry, thought, and anguish in the world will not affect the powers that be. Find one thing everyday that warms your heart, even for a second, and hold onto that feeling as long as you can. Come back to it throughout the day in times of stress. You may be surprised at how incredible you really are. You may be surprised at how much the world has to offer.
The holidays turned out to be great. My last post was just before the holidays, and I remember being so down. I was so worried for my son and family. I was so worried I would be feeling horrible and they would have to deal with me that way throughout. Luckily, I have an amazing family who pulled together and lifted me up. Although, it did not go off without a hitch, I must say that my son had a wonderful time. I got to enjoy some modified yet traditional holiday food as well as seeing the joy on my son's face. It was extra special to me because this was the first holiday I did not feel like an outcast, a burden, or forgotten. That is something I have not been able to say for at least 4 years.
The immunologists tests came back. Fortunately or unfortunately, I am not completely sure I understand the terminology and jargon he used so I will reserve my explanation and results until after my followup visit with him next week. I can say that we do have some new answers and my hope has been restored.
I really don't even want to make this entry about health. Health is such a vital part of everyday life for all of us. It has consumed my life to the umpteenth degree. Today, I would just like to take a deep breath and reflect on any other aspect of life.
I have come to the realization that the ages between 25-30 are a very difficult transition stage for many. I happen to be in this age group so I know first hand, but in my interactions with my peers as well as my elders I am hearing many of the same concerns. It got me thinking? How can they all be so confused, overwhelmed, and have so many doubts? I thought I was nearly alone in my feelings because my health has derailed so many of my plans and dreams. I was wrong. How selfish, right? HAHA
We all get to a stage in our lives where we realize that what we thought we would have accomplished, has yet to be achieved. What we thought we would be doing, most of us are not. Where we thought we'd be in our lives is far from where we are now. What will the future hold? Did I take the wrong path? Can I really live this way for the rest of my life? And why did no one tell me it was going to be so hard? Does anyone have an answer?
I do! The answer is, no one knows the answer. What I do know that is that our lives are not in our control. We can do the best we can, but we have to just go with the flow. Change is inevitable. You cannot plan who you will fall in love with. You cannot plan landing the perfect job. You cannot plan how many kids you'll have by any certain age. These things can be planned for, but they are not certainties or give ins by any stretch.
The truth of the matter is, every generation has been through this transition of being a kid turning into an independent adult. All at different ages and different stages, but everyone goes through this. But look at this from a broader lens. In your twenties, given the life expectancy these days, is only about a third (if that) of your life. The changes, uncertainties, doubts, fears, joys, accomplishments, achievements you have gone through at this stage are merely a small portion of what you have yet to see. Rest in the fact that no one knows exactly what they are doing. Rest in the fact that you have every opportunity to change the situation you are in at any point...or even, at that, maintain where you are i that's what makes you happy.
You do not have to live up to anything. You do not have to do things because someone else told you that's how it is done. No one has the answer. Find what inspires you. Don't expect great things. We forget that as kids the smallest, seemingly most insignificant, things amazed us. If reading inspires or motivates you, do it. If exercise does, do it. If blogging does, do it. If sky-diving does, do it. If starting a company does, do it. The bottom line is, nothing gets done if no work is put into it. You have to decide for yourself that "this" is what you want to do. Be confident in that. It is what makes you happy.
Yes, we all have responsibilities. We all have obligations. We all have some sort of expectations. But sometimes the simplest statements wrap it up. Do your best. That's ALL you CAN do. Beyond that, let it go. Knowing you've done what you can will give you so much power. You know the saying, change the things you can and accept those you cannot change. It's true. All the worry, thought, and anguish in the world will not affect the powers that be. Find one thing everyday that warms your heart, even for a second, and hold onto that feeling as long as you can. Come back to it throughout the day in times of stress. You may be surprised at how incredible you really are. You may be surprised at how much the world has to offer.
Wednesday, November 30, 2011
A Work In Progress
What a whirlwind I have been in lately. I honestly don't even know where to start. As I sit and stare at this monitor trying to figure out how to get this all out.......
After the scopes last month and the follow up appointments I had, I still felt like I had nothing tangible to hold onto. My mind compartmentalizes everything and tries to rationalize everything. In reality, that is impossible. Not everything in the world has a rhyme or reason. Not everything is fair, and nothing is black and white. Why, then, does my mind torture me this way? I don't know, but I try to laugh it off and keep a grasp on reality. As you can imagine, this is a challenge.
My most recent visits have left me with a few more answers and a plan of action. I guess that was the hardest to come to grips with, I had no plan of action to follow. So, with no easy way to explain things I will do my best. It is so cathartic being open and honest and laying it all out there. I don't feel like I have to explain or defend myself all the time, even if no one reads the blog. It's out there.
Digestive issues have only progressed in recent weeks. Although I have been through all the testing that would uncover a clear diagnosis, I am usually the exception to that rule. A diagnosis of chronic gastritis and pernicious anemia was clear. The colon, however; has inflammation, but there is no clear source or disease process. At this point it has been declared inflammatory bowel disease. Let me just say, the treatment for these is definitely something that takes getting used to. It is yet another life style change. Plus, I am doing, learning, and speaking of things I never imagined would be part of my life. I guess the thought of invincibility discriminates against no one.
It has almost become a daily torture. Not only is there a new set of pills and treatment I have to work into my day, but the symptoms continue. Not to the same degree, but they are there. It is unimaginable unless you go through it yourself. I actually worked with patients (when I worked) that had similar illnesses of the digestive system. I remember feeling so sorry for them because they looked miserable most of the time. I had the knowledge about the conditions, but never realized the enormity of it all until it hit me.
I have to admit, this has been the most traumatic and devastating disease process I have had to embrace. I imagine it like a stack of blocks my son would build. One block wide, with each disease diagnosis and treatment outline, add a new block. Once the stack gets tall it begins to sway and possibly crumble. My tower has tumbled. I have to pick up the pieces. I have to gather all the new information along with the lack thereof. I need to decide how I am going to stack these blocks in a way that they balance and hold strong as a standing structure. I am working on it.
This week, I finally saw an immunologist. This is supposed to be the doctor that gathers all the clues and puts them altogether to make a big picture. Everyone around me is so hopeful. Everyone around me is convinced that someone will find the source that links all these autoimmune diseases together. I, however; lack that hope. I have been to UNM. I have been to the Mayo Clinic. I have been to doctors and specialists all over. In the beginning they are all bull dogs. After a few tests are run and the doctor is left stumped, I have been tossed to the curb or the doctor has thrown in the towel. I pray this is not the case this time.
The doctor seemed, at first impression, ready to take on the task. He began testing right away. We did find out I am allergic to cats. That is funny because my parents had cats my entire life. I never knew. I am also allergic to several trees and grass as well as mold. My breathing is labored due to the inflammation in my belly. It was good to walk out of the doctor's office with some new information. I would imagine, since I went my entire life not treating these allergies, treating them may relieve some of the general symptoms I feel everyday. The other thing this new doctor did was decide to test my immune system itself. Can you believe that not one doctor has done that before? Many have tested for specific antibodies that are linked to specific diseases, but not one doctor has tested the function and activity of the immune system.
The lab tests were done yesterday. The doctor seemed eager to start this journey so he told me I would get the results once he got them. If need be, we will do more testing thereafter. They drew so much blood, I can't see how nothing would show up, but let's be realistic. We are talking about me here. I am the queen of going against the grain. I am a master at not fitting into the box. I am the outlier.
I make an effort not to get my hopes up. I do not have very much faith in science and medicine at this point. Those who practice this are merely humans. Mistakes are made, things are overlooked, bias is inevitable. I can only pray for the miracle of answers to come our way.
This Christmas season is difficult. My six year old son understands things more and more. We have spent months focusing on my health. Since Thanksgiving it has only become more consuming. We decorated our house. We have bought presents. We plan on spending time with family. I just pray his memories of this season are not tainted by all of this.
Merry Christmas and Happy New Year!
After the scopes last month and the follow up appointments I had, I still felt like I had nothing tangible to hold onto. My mind compartmentalizes everything and tries to rationalize everything. In reality, that is impossible. Not everything in the world has a rhyme or reason. Not everything is fair, and nothing is black and white. Why, then, does my mind torture me this way? I don't know, but I try to laugh it off and keep a grasp on reality. As you can imagine, this is a challenge.
My most recent visits have left me with a few more answers and a plan of action. I guess that was the hardest to come to grips with, I had no plan of action to follow. So, with no easy way to explain things I will do my best. It is so cathartic being open and honest and laying it all out there. I don't feel like I have to explain or defend myself all the time, even if no one reads the blog. It's out there.
Digestive issues have only progressed in recent weeks. Although I have been through all the testing that would uncover a clear diagnosis, I am usually the exception to that rule. A diagnosis of chronic gastritis and pernicious anemia was clear. The colon, however; has inflammation, but there is no clear source or disease process. At this point it has been declared inflammatory bowel disease. Let me just say, the treatment for these is definitely something that takes getting used to. It is yet another life style change. Plus, I am doing, learning, and speaking of things I never imagined would be part of my life. I guess the thought of invincibility discriminates against no one.
It has almost become a daily torture. Not only is there a new set of pills and treatment I have to work into my day, but the symptoms continue. Not to the same degree, but they are there. It is unimaginable unless you go through it yourself. I actually worked with patients (when I worked) that had similar illnesses of the digestive system. I remember feeling so sorry for them because they looked miserable most of the time. I had the knowledge about the conditions, but never realized the enormity of it all until it hit me.
I have to admit, this has been the most traumatic and devastating disease process I have had to embrace. I imagine it like a stack of blocks my son would build. One block wide, with each disease diagnosis and treatment outline, add a new block. Once the stack gets tall it begins to sway and possibly crumble. My tower has tumbled. I have to pick up the pieces. I have to gather all the new information along with the lack thereof. I need to decide how I am going to stack these blocks in a way that they balance and hold strong as a standing structure. I am working on it.
This week, I finally saw an immunologist. This is supposed to be the doctor that gathers all the clues and puts them altogether to make a big picture. Everyone around me is so hopeful. Everyone around me is convinced that someone will find the source that links all these autoimmune diseases together. I, however; lack that hope. I have been to UNM. I have been to the Mayo Clinic. I have been to doctors and specialists all over. In the beginning they are all bull dogs. After a few tests are run and the doctor is left stumped, I have been tossed to the curb or the doctor has thrown in the towel. I pray this is not the case this time.
The doctor seemed, at first impression, ready to take on the task. He began testing right away. We did find out I am allergic to cats. That is funny because my parents had cats my entire life. I never knew. I am also allergic to several trees and grass as well as mold. My breathing is labored due to the inflammation in my belly. It was good to walk out of the doctor's office with some new information. I would imagine, since I went my entire life not treating these allergies, treating them may relieve some of the general symptoms I feel everyday. The other thing this new doctor did was decide to test my immune system itself. Can you believe that not one doctor has done that before? Many have tested for specific antibodies that are linked to specific diseases, but not one doctor has tested the function and activity of the immune system.
The lab tests were done yesterday. The doctor seemed eager to start this journey so he told me I would get the results once he got them. If need be, we will do more testing thereafter. They drew so much blood, I can't see how nothing would show up, but let's be realistic. We are talking about me here. I am the queen of going against the grain. I am a master at not fitting into the box. I am the outlier.
I make an effort not to get my hopes up. I do not have very much faith in science and medicine at this point. Those who practice this are merely humans. Mistakes are made, things are overlooked, bias is inevitable. I can only pray for the miracle of answers to come our way.
This Christmas season is difficult. My six year old son understands things more and more. We have spent months focusing on my health. Since Thanksgiving it has only become more consuming. We decorated our house. We have bought presents. We plan on spending time with family. I just pray his memories of this season are not tainted by all of this.
Merry Christmas and Happy New Year!
Tuesday, November 15, 2011
Step By Step
This is beginning to turn into a theme, much like my life has been for the past several years. Every few months things take a bad turn. Doctors usually are rendered clueless and boggled that something is happening again. They begin to search for answers, each time thinking we are getting closer and closer to the key that unlocks the mystery of me. I am always filled with this false sense of hope that the key will be found. I am starting to learn I need to find my hope elsewhere.
I saw my rheumatologist yesterday. I really love the doctors I have on my side. They are all bulldogs. They are all compassionate. They are all grounded. I filled him in on the information I got from my GI doc. I always bring paperwork and lab results so that all my doctors are on the same page and have accurate information. As he looked over it all he just kept saying, "hhmm curious........interesting..........hhhmmm curious." I laughed because that is the way I am feeling. But he is the doctor, he should know more. I decided it is time I really start advocating for myself.
I am tired of seeing doctor after doctor. I travel up to 250 miles for these appointments on some occasions. I wait in the waiting room for 20 minutes or more. I sit in the exam room for 15 minutes or so waiting to see the doctor. The doctor comes in (whatever specialty) and does his work. That usually takes only 5 to 7 minutes. They sign a refill prescription and schedule a follow up appointment. Usually somewhere in the appointment the overlapping symptoms and such are discussed. Often times the doctors question each other or say what they'd do differently had that been their specialty. Never do these doctors talk to each other. So, yesterday I requested that my rheumatologist get on a conference call with my primary and gastroenterologist to bounce ideas off each other. I would like them to come to a consensus and work together. He had no qualms about it, so I felt successful. One step at a time.
Rheumatology is a specialty that is difficult. Often times people are seen by a rheumatologist with very vague symptoms that other doctors have ignored or brushed aside. With this knowledge, I asked. I asked all the questions that eat away at me at night. Not one doctor has flat out told me what they are looking for or what their brain tells them when they see my chart. They keep me on a need to know basis, and apparently they do not think I need to know very much until they have certainty on their side. "What could this be? What would the immunologist be looking for? What do you think is going on?" He answered. "I'd look into MEN syndrome which is multiple endocrine and could cause a lot of these autimmunities you have. Possibly Schmidt syndrome. It's hard to say." I was pleased he had a thought. I was pleased to know he was not clueless. The answer was still very vague, but there were words I could take and research. That's what I did.
I will not bother you with the definitions or explanations of these syndromes. You are more than welcome and capable of looking them up yourself. I will educate and speak more on them if a diagnosis is made. Ultimately, what I got from my conversation with the rheumatologist was similar to what I have gotten from several other doctors in recent years. Yes, we are coming up with answers, but we are treating what we can treat. We cannot replace anything or reverse or cure anything. Quality of life is what it is. I have been told to prepare my family that things will get tougher. We are doing everything we can do.
One step at a time. Each flare up gets us closer and closer to the full picture. I believe with each hurdle I am learning. I will come to a place where I can accept and embrace the totality of it all.....someday.
I saw my rheumatologist yesterday. I really love the doctors I have on my side. They are all bulldogs. They are all compassionate. They are all grounded. I filled him in on the information I got from my GI doc. I always bring paperwork and lab results so that all my doctors are on the same page and have accurate information. As he looked over it all he just kept saying, "hhmm curious........interesting..........hhhmmm curious." I laughed because that is the way I am feeling. But he is the doctor, he should know more. I decided it is time I really start advocating for myself.
I am tired of seeing doctor after doctor. I travel up to 250 miles for these appointments on some occasions. I wait in the waiting room for 20 minutes or more. I sit in the exam room for 15 minutes or so waiting to see the doctor. The doctor comes in (whatever specialty) and does his work. That usually takes only 5 to 7 minutes. They sign a refill prescription and schedule a follow up appointment. Usually somewhere in the appointment the overlapping symptoms and such are discussed. Often times the doctors question each other or say what they'd do differently had that been their specialty. Never do these doctors talk to each other. So, yesterday I requested that my rheumatologist get on a conference call with my primary and gastroenterologist to bounce ideas off each other. I would like them to come to a consensus and work together. He had no qualms about it, so I felt successful. One step at a time.
Rheumatology is a specialty that is difficult. Often times people are seen by a rheumatologist with very vague symptoms that other doctors have ignored or brushed aside. With this knowledge, I asked. I asked all the questions that eat away at me at night. Not one doctor has flat out told me what they are looking for or what their brain tells them when they see my chart. They keep me on a need to know basis, and apparently they do not think I need to know very much until they have certainty on their side. "What could this be? What would the immunologist be looking for? What do you think is going on?" He answered. "I'd look into MEN syndrome which is multiple endocrine and could cause a lot of these autimmunities you have. Possibly Schmidt syndrome. It's hard to say." I was pleased he had a thought. I was pleased to know he was not clueless. The answer was still very vague, but there were words I could take and research. That's what I did.
I will not bother you with the definitions or explanations of these syndromes. You are more than welcome and capable of looking them up yourself. I will educate and speak more on them if a diagnosis is made. Ultimately, what I got from my conversation with the rheumatologist was similar to what I have gotten from several other doctors in recent years. Yes, we are coming up with answers, but we are treating what we can treat. We cannot replace anything or reverse or cure anything. Quality of life is what it is. I have been told to prepare my family that things will get tougher. We are doing everything we can do.
One step at a time. Each flare up gets us closer and closer to the full picture. I believe with each hurdle I am learning. I will come to a place where I can accept and embrace the totality of it all.....someday.
Friday, October 28, 2011
A New Chapter?
Although I would rather not think about any of this right now, I'd like to update you all on our most recent findings.
This week was the conclusion of the testing my GI had set up to determine what was going on with me digestively. Let me just say, the preparation for many of these tests is near torture so I am so glad they are over. I suppose if this is an open forum and I am trying to connect with others who may be dealing with similar issues I need to be honest and open as well. I had a small bowel follow through, a hida scan, an abdominal ultra sound, blood work, stool samples, a colonoscopy, and an upper endoscopy. All of which, except the stool sample and blood work, required fasting of some sort. Some required additional preparation, non of which was enjoyable. When you are suffering, you are willing to do nearly anything to relieve the pain. That's what I did.
At this point, there was no evidence of Ulcerative Colitis or Crohn's disease. That was our biggest fear and the doctors initial thought. The biopsies are still out so we will know for sure once we get them back. That is a relief. What they did find was my immune system attacking (surprise, surprise) the parietal cells of my stomach. Leaving my stomach a beautiful disaster.
Parietal cells secrete gastric acid and intrinsic factor. Intrinsic factor deals directly with the absorption of vitamin B12. The inability to absorb B12 is called pernicious anemia. The treatment is usually B12 supplements taken sublingually or by injection. Gastric acid is a digestive fluid. Gastric acid plays a key role in the breakdown and digestion of proteins, by activating digestive enzymes. Together the enzymes and acids unravel the long chains of amino acids found in proteins.
The doctor immediately checked my B12 levels, but I have been on B12 injections for a few months now based on a blood test that showed antibodies against these parietal cells. I suspect the levels should be normal and I will continue the injections. As for the gastric acid, we were told there is no replacing it. My stomach did show a lot of damage so I was placed on a medication to heal it. I understand this medication is normally used to treat stomach ulcers.
I was told at the conclusion of the final scope that a referral was going to be sent to an immunologist. At this stage of the game, the goal is to stop the immune system from attacking healthy organ systems and continue fighting foreign invaders. In a few weeks I will have follow up appointments and get the final results of all the tests. The GI doctor seemed positive and said, "We're on the right track."
I have mixed emotions about this all. I assume anyone would. On one hand, I am happy that they actually found the source of this unyielding pain. I am glad there is some validation. At some point, you start to feel crazy feeling so sick with no answers. I am also glad to be heading in the right direction to having the full picture of my health. On the other hand, I am overwhelmed and frightened. I was looking forward to some relief from the pain and discomfort. I knew that would be unlikely if it turned out to be UC or Crohn's so when I heard the intestines looked good I was excited. To know that there is no way to replace the gastric acid is rough because I know the lack of digestion is causing the pain. Bundle that along with the lack of absorption of key nutrients leads to feeling pretty run down quite often. I am frightened by what the immunologist may find. I realize I should compartmentalize. Looking at this as a whole is too overwhelming. But human nature....well, I'll say my nature, is to plan and prepare...and worry I guess. My way of dealing with this is to lay it all out, even the "unimportant" factors, and then compartmentalizing and move on. That's what I'll do here.
I have been so self conscious about my physical appearance. Let's face it, what woman isn't. I feel very vain and superficial for feeling this way, but I will not deny it. I have acne. I hate it. I learned that this is a symptom of the antibodies attacking the parietal cells. Now, I know it will not clear up so I will have to learn to deal with a teenagers face in adulthood. I have also had a very straight framed body. With the most recent weight loss, I feel like a little boy. That ultra thin hungry look is not what I go for. Add that to the fact that I cannot wear clothing that is too tight or restricting on the abdominal area because it just puts too much pressure there, makes me feel sloppy. I am in definite need of a fashionista to find some comfy, but flattering clothes. That's enough vanity for today.
Now moving on to the physical aspects. I am overwhelmed and frightened by the fact that they can continue to "band-aid" the pain, but it will never be resolved. I am learning to eat slowly and chew very well. I am so limited, at this point, as to how much and what I can ingest. Many woman would be happy to be worrying about being too thin or being forced to eat less and be conscious about what is in your mouth, but it is not something that I enjoy at all. Our culture and society is inundated with food. Social gatherings, holidays, dates, movies, etc all involve food. It is an integral part of our lives. To me it is nothing but the enemy. I was hoping this would not be the case for the duration, but the harsh reality is, it will be. Rough road to be looking down.
So, I take all of this. The good, the bad, and the ugly. The truths, the uncertainties, and the predictions. Gather them all in a pile. I will take it and put it at the back of my mind. When something needs to be accessed, it'll be there. In the meantime, I wait. I focus on my family. I focus on my gorgeous son, who, by the way, turned 6 yesterday. I take his smiling face and incredible heart and mind and I run with it. Soak it up. Keep my eye on the prize and leave the rest to God. The burden is too big to carry so I imagine lifting it off of my shoulders and throwing it to Him. I imagine my own father, who passed from complications of Type I diabetes nearly 24 years ago, looking down on me. I feel him smiling down on me and guiding me. I long to hear his voice. I would love to ask for advice. I know he is listening. I know he is talking to me. I just look for the signs. I embrace my parents love and support. I appreciate the warmth of my sister who lets me lose it whenever I feel the need. I admire my husband for his strength and unyielding love throughout this all. And I remember, no one is put on this earth to suffer. It only enhances the good in life.
This week was the conclusion of the testing my GI had set up to determine what was going on with me digestively. Let me just say, the preparation for many of these tests is near torture so I am so glad they are over. I suppose if this is an open forum and I am trying to connect with others who may be dealing with similar issues I need to be honest and open as well. I had a small bowel follow through, a hida scan, an abdominal ultra sound, blood work, stool samples, a colonoscopy, and an upper endoscopy. All of which, except the stool sample and blood work, required fasting of some sort. Some required additional preparation, non of which was enjoyable. When you are suffering, you are willing to do nearly anything to relieve the pain. That's what I did.
At this point, there was no evidence of Ulcerative Colitis or Crohn's disease. That was our biggest fear and the doctors initial thought. The biopsies are still out so we will know for sure once we get them back. That is a relief. What they did find was my immune system attacking (surprise, surprise) the parietal cells of my stomach. Leaving my stomach a beautiful disaster.
Parietal cells secrete gastric acid and intrinsic factor. Intrinsic factor deals directly with the absorption of vitamin B12. The inability to absorb B12 is called pernicious anemia. The treatment is usually B12 supplements taken sublingually or by injection. Gastric acid is a digestive fluid. Gastric acid plays a key role in the breakdown and digestion of proteins, by activating digestive enzymes. Together the enzymes and acids unravel the long chains of amino acids found in proteins.
The doctor immediately checked my B12 levels, but I have been on B12 injections for a few months now based on a blood test that showed antibodies against these parietal cells. I suspect the levels should be normal and I will continue the injections. As for the gastric acid, we were told there is no replacing it. My stomach did show a lot of damage so I was placed on a medication to heal it. I understand this medication is normally used to treat stomach ulcers.
I was told at the conclusion of the final scope that a referral was going to be sent to an immunologist. At this stage of the game, the goal is to stop the immune system from attacking healthy organ systems and continue fighting foreign invaders. In a few weeks I will have follow up appointments and get the final results of all the tests. The GI doctor seemed positive and said, "We're on the right track."
I have mixed emotions about this all. I assume anyone would. On one hand, I am happy that they actually found the source of this unyielding pain. I am glad there is some validation. At some point, you start to feel crazy feeling so sick with no answers. I am also glad to be heading in the right direction to having the full picture of my health. On the other hand, I am overwhelmed and frightened. I was looking forward to some relief from the pain and discomfort. I knew that would be unlikely if it turned out to be UC or Crohn's so when I heard the intestines looked good I was excited. To know that there is no way to replace the gastric acid is rough because I know the lack of digestion is causing the pain. Bundle that along with the lack of absorption of key nutrients leads to feeling pretty run down quite often. I am frightened by what the immunologist may find. I realize I should compartmentalize. Looking at this as a whole is too overwhelming. But human nature....well, I'll say my nature, is to plan and prepare...and worry I guess. My way of dealing with this is to lay it all out, even the "unimportant" factors, and then compartmentalizing and move on. That's what I'll do here.
I have been so self conscious about my physical appearance. Let's face it, what woman isn't. I feel very vain and superficial for feeling this way, but I will not deny it. I have acne. I hate it. I learned that this is a symptom of the antibodies attacking the parietal cells. Now, I know it will not clear up so I will have to learn to deal with a teenagers face in adulthood. I have also had a very straight framed body. With the most recent weight loss, I feel like a little boy. That ultra thin hungry look is not what I go for. Add that to the fact that I cannot wear clothing that is too tight or restricting on the abdominal area because it just puts too much pressure there, makes me feel sloppy. I am in definite need of a fashionista to find some comfy, but flattering clothes. That's enough vanity for today.
Now moving on to the physical aspects. I am overwhelmed and frightened by the fact that they can continue to "band-aid" the pain, but it will never be resolved. I am learning to eat slowly and chew very well. I am so limited, at this point, as to how much and what I can ingest. Many woman would be happy to be worrying about being too thin or being forced to eat less and be conscious about what is in your mouth, but it is not something that I enjoy at all. Our culture and society is inundated with food. Social gatherings, holidays, dates, movies, etc all involve food. It is an integral part of our lives. To me it is nothing but the enemy. I was hoping this would not be the case for the duration, but the harsh reality is, it will be. Rough road to be looking down.
So, I take all of this. The good, the bad, and the ugly. The truths, the uncertainties, and the predictions. Gather them all in a pile. I will take it and put it at the back of my mind. When something needs to be accessed, it'll be there. In the meantime, I wait. I focus on my family. I focus on my gorgeous son, who, by the way, turned 6 yesterday. I take his smiling face and incredible heart and mind and I run with it. Soak it up. Keep my eye on the prize and leave the rest to God. The burden is too big to carry so I imagine lifting it off of my shoulders and throwing it to Him. I imagine my own father, who passed from complications of Type I diabetes nearly 24 years ago, looking down on me. I feel him smiling down on me and guiding me. I long to hear his voice. I would love to ask for advice. I know he is listening. I know he is talking to me. I just look for the signs. I embrace my parents love and support. I appreciate the warmth of my sister who lets me lose it whenever I feel the need. I admire my husband for his strength and unyielding love throughout this all. And I remember, no one is put on this earth to suffer. It only enhances the good in life.
Saturday, October 22, 2011
Family Support
Please check out this blog. It is written by my brother-in-law who happens to be a jack of all trades. Not only am I proud of his support, but I am proud of the work he has on his blog. Check him out!
http://someaudioguy.blogspot.com/2011/10/my-photography-and-helping-cause.html
http://someaudioguy.blogspot.com/2011/10/my-photography-and-helping-cause.html
The ins n outs
I am writing this today in anticipation of Monday's procedures. I am finally being scoped to find answers to my weight loss, lack of digestion, pain, and other unmentionables. I have been waiting years for relief. The last several weeks has been full of tests and scans. I am completely exhausted, but that light at the end of the tunnel keeps me pushing forward.....along with that amazing smile on my son's face!
Last Saturday my GI doc called and told me that I tested positive for an infection called Clostridium Difficile also known as C Diff. He put me on an antibacterial medication and instructed to start it immediately, and to report back to him on Wednesday. I had no idea what this was so I looked it up. As far as I understand it is a bacteria in the colon. A lot of people are exposed to this or have it in their body, but their immune systems can take care of it. Apparently, if you have been on antibiotics for a long period of time they can diminish the good bacteria allowing the C Diff to take over. I have not been on antibiotics recently. Another risk factor is if you live in a long term care facility or have been in the hospital for more than 2 weeks. Again, not a part of my life recently. And finally, the last risk factor is AIDS/HIV or a suppressed immune system. I trust it is the latter.
The day before that phone call I had an ultrasound. It was check on my internal organs, the ducts, their functioning, and blood flow. The woman who did the US was great. She was so warm, friendly, and compassionate. It is people like her that remind me how good the world really is. She found some calcifications on my gallbladder. At this moment in time, to my knowledge, no doctor has reviewed that report. I believe it will need to be removed by the way she described it, but that is another waiting game.
I have been running myself ragged trying to get things in order at home. I usually know when things are going to get difficult and try to plan accordingly. Although, Monday's procedures are routine and outpatient, I have no idea what they will see. My primary doctor has been out of town all week so I assume when she returns she will see the US report as well as the tests results and make a determination on what steps to take next. Fortunately or unfortunately because I have been in this position before for other diseases or organ systems, I know the next few weeks if not months will take a lot out of me. My husband works full time so I try to make sure there are only necessities to take care of while I am out of commission. Make his life as easy as possible.
Tonight, we are planning on attending a Halloween party. This should be exciting and fun. I have not gone out for fun in over a month. I rarely see many of my friends and the majority of them will be at this party. My son's aunt will spend time with him so my husband and I can have a night off. I should be anxiously awaiting the fun......instead I am anxiously awaiting how I will feel. My stomach is not so great today. I feel a lot of pressure under my ribs and tenderness throughout my abdomen. I have no appetite and a horrible taste in my mouth (probably from the antibacterial). I am nervous about dressing up because woman's costumes are generally pretty skimpy. Even though I am tiny, I am very self conscious because of my gut issues. I also get cold very easily and it tends to make me ache. I think I covered my bases by buying some clothes to layer, but hopefully keep the costume cute. I hope I can push this all aside for a few hours and enjoy myself. I just need some rest. Wish me luck.
Last Saturday my GI doc called and told me that I tested positive for an infection called Clostridium Difficile also known as C Diff. He put me on an antibacterial medication and instructed to start it immediately, and to report back to him on Wednesday. I had no idea what this was so I looked it up. As far as I understand it is a bacteria in the colon. A lot of people are exposed to this or have it in their body, but their immune systems can take care of it. Apparently, if you have been on antibiotics for a long period of time they can diminish the good bacteria allowing the C Diff to take over. I have not been on antibiotics recently. Another risk factor is if you live in a long term care facility or have been in the hospital for more than 2 weeks. Again, not a part of my life recently. And finally, the last risk factor is AIDS/HIV or a suppressed immune system. I trust it is the latter.
The day before that phone call I had an ultrasound. It was check on my internal organs, the ducts, their functioning, and blood flow. The woman who did the US was great. She was so warm, friendly, and compassionate. It is people like her that remind me how good the world really is. She found some calcifications on my gallbladder. At this moment in time, to my knowledge, no doctor has reviewed that report. I believe it will need to be removed by the way she described it, but that is another waiting game.
I have been running myself ragged trying to get things in order at home. I usually know when things are going to get difficult and try to plan accordingly. Although, Monday's procedures are routine and outpatient, I have no idea what they will see. My primary doctor has been out of town all week so I assume when she returns she will see the US report as well as the tests results and make a determination on what steps to take next. Fortunately or unfortunately because I have been in this position before for other diseases or organ systems, I know the next few weeks if not months will take a lot out of me. My husband works full time so I try to make sure there are only necessities to take care of while I am out of commission. Make his life as easy as possible.
Tonight, we are planning on attending a Halloween party. This should be exciting and fun. I have not gone out for fun in over a month. I rarely see many of my friends and the majority of them will be at this party. My son's aunt will spend time with him so my husband and I can have a night off. I should be anxiously awaiting the fun......instead I am anxiously awaiting how I will feel. My stomach is not so great today. I feel a lot of pressure under my ribs and tenderness throughout my abdomen. I have no appetite and a horrible taste in my mouth (probably from the antibacterial). I am nervous about dressing up because woman's costumes are generally pretty skimpy. Even though I am tiny, I am very self conscious because of my gut issues. I also get cold very easily and it tends to make me ache. I think I covered my bases by buying some clothes to layer, but hopefully keep the costume cute. I hope I can push this all aside for a few hours and enjoy myself. I just need some rest. Wish me luck.
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